Trust is difficult to define. Instead of doing so, I propose that the best way to understand the concept is through a genealogical account. I show how a root notion of trust arises out of some basic features of what it is for humans to live socially, in which we rely on others to act cooperatively. I explore how this concept acquires resonances of hope and threat, and how we analogically apply this in related but different contexts. The genealogical account (...) explains both why the notion has such value for us and why it is difficult to define. (shrink)

The European Union’s policies regarding genetically modified food are based on the precautionary principle and the requirement of respecting consumers’ autonomy. We ask whether the requirement of respecting consumers’ autonomy regarding GMF implies that both GMF and non-GMF products should be available in the market. According to one line of thought, consumers’ choices may be autonomous even when the both types of products are not available. A food market with only GMF or only non-GMF products does not strictly speaking compel (...) people to buy the type of products available, and a possibility to refuse to buy is enough for consumers’ choice to be autonomous. According to another line of thought, the unavailability of GMF or non-GMF products restricts the autonomy of those consumers who are unwilling to use the only type of products available in the market. From the point of view of autonomy, a food market with only GMF or only non-GMF products does not offer enough alternatives for consumers. Moreover, the whole point of the European Union’s requirement of respecting consumers’ autonomy is to enable an autonomous choice between GMF and non-GMF—not just to give a possibility to refrain from buying. However, this does not imply that producers, processors, wholesalers, retailers, or public authorities have a moral duty to see that there are both GMF and non-GMF products available in the market. The requirement to respect autonomy is prima facie in nature, and in the context of GMF, other prima facie requirements are often stronger and override it. Not only the consumers’ autonomy of choice but also environmental values, other people’s well-being, and the autonomous choice of farmers, retailers, and other relevant parties should be respected. Thus, according to the both lines of thought, the requirement to respect consumers’ autonomy of choice does not imply that there should be both GMF and non-GMF products available in the market. (shrink)

Trust features prominently in a number of policy documents that have been issued in recent years to facilitate data sharing and international collaboration in medical research. However, it often remains unclear what is meant by ‘trust’. By exploring a concrete international collaboration between Denmark and Pakistan, we develop a way of unpacking trust that shifts focus from what trust ‘is’ to what people invest in relationships and what references to trust do for them in these relationships. Based on interviews in (...) both Pakistan and Denmark with people who provide blood samples and health data for the same laboratory, we find that when participants discuss trust they are trying to shape their relationship to researchers while simultaneously communicating important hopes, fears and expectations. The types of trust people talk about are never unconditional, but involve awareness of uncertainties and risks. There are different things at stake for people in different contexts, and therefore it is not the same to trust researchers in Pakistan as it is in Denmark, even when participants donate to the same laboratory. We conclude that casual references to ‘trust’ in policy documents risk glossing over important local differences and contribute to a de-politicization of basic inequalities in access to healthcare. (shrink)

The new dilemmas and responsibilities which arise in bioethics both because of the unprecedented pace of scientific development and of growing moral pluralism are more and more difficult to grapple with. At the ‘global’ level, the call for the universal nature at least of some fundamental moral values and principles is often being contended as a testament of arrogance, if not directly as a new kind of subtler imperialism. The human rights framework itself, which provided the basis for the most (...) relevant international declarations and documents, is not exempt from the charge. However, the refusal of a top-down conception of the universal as a sort of product for exportation should not be confused with a relativistic landscape, where all the cows can be indifferently black or white. This contribution aims at outlining an approach, which reconciles universalism as enshrined in founding human rights declarations with respect for cultural diversity. In order to do so, two conceptual frameworks are discussed: the ‘tool-kit’ model and the morals/ethics difference. The example of the right to quality health care confirms the argument that striking a balance between cherishing pluralism and defending some fundamental rights and obligations does not amount to an assertion of moral imperialism. (shrink)

Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testing and its ethical implications. Participants were critical towards DTC GT. Criticism (...) was directed at health-related, predictive testing, while lifestyle tests were accepted and even welcomed to some extent. Participants expressed strong reservations regarding commercial provision of genetic diagnostics and expressed a lack of trust in respective companies. They preferred non-commercial distribution within the public healthcare system. Participants also expressed high expectations of physicians’ abilities to interpret information obtained via DTC GT companies and provide counseling. Legal restrictions on commercial distribution of genetic tests were opposed, with participants arguing that it should be available to consumers. DTC GT companies are not perceived as trustworthy when compared to the public healthcare system and its professional ethical standards and practices. Laypeople rated general consumer autonomy higher than their own concerns, thus recommending against strong legal regulation. We conclude that medicine’s trustworthiness may be negatively affected if commercial provision is not visibly opposed by the medical professions, while DTC GT companies may gain in trustworthiness if they adapt to standards and practices upheld in medicine. (shrink)

ZusammenfassungMedizinethische Forschung wird häufig unter Verwendung sozialempirischer Methoden durchgeführt. Insbesondere die Anwendung von Methoden der qualitativen Sozialforschung hat eine breite Akzeptanz gefunden. Nach Kenntnis der Autoren fehlen allerdings bislang Untersuchungen, die den spezifischen Beitrag qualitativer Sozialforschung für medizinethische Untersuchungen unter Bezugnahme auf die Merkmale qualitativer Methoden darlegen. Ausgehend von einem handlungsorientierenden medizinethischen Forschungsvorhaben zur Unterstützung der Entscheidungsfindung in der Onkologie wird der Beitrag der verwendeten qualitativen Methoden für das Forschungsvorhaben unter Bezugnahme auf zwei Kennzeichen qualitativer Sozialforschung – Rekonstruktion der sozialen (...) Praxis und Explikation von informellem Wissen – ausgeführt. Den Abschluss bilden eine Analyse von Limitationen der Verwendung qualitativer Forschungsmethoden in medizinethischen Forschungsvorhaben sowie die Identifizierung offener Forschungsfragen. (shrink)

Prenatal care and the practice of prenatal genetic testing are about to be changed fundamentally. Due to several ground-breaking technological developments prenatal screening and diagnosis (PND) will soon be offered earlier in gestation, with less procedure-related risks and for a profoundly enlarged variety of targets. In this paper it is argued that the existing normative framework for prenatal screening and diagnosis cannot answer adequately to these new developments. In concentrating on issues of informed consent and the reproductive autonomy of the (...) pregnant women the ethical debate misses problems related to the clinical pathway as a whole and to implicit normative attributions to clinical actions or the function of health care professionals. If, however, ethical debate would focus on the clinical context and on the ends of PND to a larger extent, it would be able to provide a more comprehensive analysis of the ethical challenges especially of the new technologies in order to be more adequately prepared for their implementation. (shrink)

Some have objected to human enhancement on the grounds that it violates the autonomy of the enhanced. These objections, however, overlook the interesting possibility that autonomy itself could be enhanced. How, exactly, to enhance autonomy is a difficult problem due to the numerous and diverse accounts of autonomy in the literature. Existing accounts of autonomy enhancement rely on narrow and controversial conceptions of autonomy. However, we identify one feature of autonomy common to many mainstream accounts: reasoning ability. Autonomy can then (...) be enhanced by improving people’s reasoning ability, in particular through cognitive enhancement; given how valuable autonomy is usually taken to be, this gives us extra reason to pursue such cognitive enhancements. Moreover, autonomy-based objections will be especially weak against such enhancements. As we will argue, those who are worried that enhancements will inhibit people’s autonomy should actually embrace those enhancements that will improve autonomy. (shrink)

The advocates of Integrative Bioethics have insisted that this recently emerging project aspires to become a new stage of bioethical development, surpassing both biomedically oriented bioethics and global bioethics. We claim in this paper that if the project wants to successfully replace the two existing paradigms, it at least needs to properly address and surmount the lack of common moral vocabulary problem. This problem points to a semantic incommensurability due to cross-language communication in moral terms. This paper proceeds as follows. (...) In the first part, we provide an overview of Integrative Bioethics and its conceptual building blocks: mutlidisciplinarity, interdisciplinarity, and transdisciplinarity. In the second part, we disclose the problem of semantic incommensurability. The third part gives an overview of various positions on the understanding of interdisciplinarity and integration in interdisciplinary communication, and corresponding attempts at solving the lack of common moral vocabulary problem. Here we lean mostly on Holbrook’s three theses regarding the character of interdisciplinary communication. Finally, in the fourth part, we discuss a particular bioethical case—that of euthanasia—to demonstrate the challenge semantic incommensurability poses to dialogues in Integrative Bioethics. We conclude that Integrative Bioethics does not offer a methodological toolset that would warrant optimism in its advocates’ predictions of surpassing current modes of doing bioethics. Since Integrative Bioethics leaves controversial methodological questions unresolved on almost all counts and shows no attempts at overcoming the critical stumbling points, we argue for its rejection. (shrink)

In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose (...) that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics’ individual – U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures. (shrink)

This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several (...) important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives. (shrink)

Empirical-ethical research constitutes a relatively new field which integrates socio-empirical research and normative analysis. As direct inferences from descriptive data to normative conclusions are problematic, an ethical framework is needed to determine the relevance of the empirical data for normative argument. While issues of normative-empirical collaboration and questions of empirical methodology have been widely discussed in the literature, the normative methodology of empirical-ethical research has seldom been addressed. Based on our own research experience, we discuss one aspect of this normative (...) methodology, namely the selection of an ethical theory serving as a background for empirical-ethical research. (shrink)

Hospize verstehen sich als Orte einer ganzheitlichen Sterbebegleitung, welche nicht allein die Behandlung körperlicher und psychischer Symptome, sondern auch die soziale und spirituelle Betreuung der Sterbenden beinhaltet. Eine zentrale Bedeutung innerhalb dieser umfassenden Begleitung am Lebensende hat die Idee der Selbstbestimmung. Dem Hospizgast soll ermöglicht werden, im Sinne einer größtmöglichen Autonomie über die eigenen Belange bis zuletzt selbst entscheiden zu können. Diese zentrale Zielsetzung der Hospizarbeit wurde in der Literatur bisher überwiegend in theoretisch-programmatischer Weise thematisiert, es liegen jedoch kaum Untersuchungen (...) zu der Frage vor, wie die Idee der „Selbstbestimmung bis zuletzt“ im Alltag der Hospize praktisch umgesetzt wird. Über die besonderen Umstände der Pflege in stationären Hospizen hinaus ist der hier zugrunde gelegte Begriff von Autonomie auch von grundsätzlichem medizinethischen Interesse. Das ganzheitlich-palliative Konzept von Behandlung und Pflege, welches bereits im Hospiz als Institution fest verankert ist, legt nahe, dass die Idee der Selbstbestimmung in diesem Umfeld anders konzeptualisiert wird als im Bereich der „klassischen“, zumeist kurativ orientierten Medizin. Die qualitative Interviewstudie mit haupt- und ehrenamtlichen Mitarbeiterinnen und Mitarbeitern konnte zeigen, dass in stationären Hospizen ein Konzept von Selbstbestimmung vertreten wird, welches über rein medizinische Entscheidungen weit hinausgeht. Zugleich konnte aber auch herausgearbeitet werden, wo nach Ansicht der Mitarbeiterinnen und Mitarbeiter mögliche Grenzen der Selbstbestimmung des Gastes im Hospiz liegen. (shrink)

Hospize verstehen sich als Orte einer ganzheitlichen Sterbebegleitung, welche nicht allein die Behandlung körperlicher und psychischer Symptome, sondern auch die soziale und spirituelle Betreuung der Sterbenden beinhaltet. Eine zentrale Bedeutung innerhalb dieser umfassenden Begleitung am Lebensende hat die Idee der Selbstbestimmung. Dem Hospizgast soll ermöglicht werden, im Sinne einer größtmöglichen Autonomie über die eigenen Belange bis zuletzt selbst entscheiden zu können. Diese zentrale Zielsetzung der Hospizarbeit wurde in der Literatur bisher überwiegend in theoretisch-programmatischer Weise thematisiert, es liegen jedoch kaum Untersuchungen (...) zu der Frage vor, wie die Idee der „Selbstbestimmung bis zuletzt“ im Alltag der Hospize praktisch umgesetzt wird. Über die besonderen Umstände der Pflege in stationären Hospizen hinaus ist der hier zugrunde gelegte Begriff von Autonomie auch von grundsätzlichem medizinethischen Interesse. Das ganzheitlich-palliative Konzept von Behandlung und Pflege, welches bereits im Hospiz als Institution fest verankert ist, legt nahe, dass die Idee der Selbstbestimmung in diesem Umfeld anders konzeptualisiert wird als im Bereich der „klassischen“, zumeist kurativ orientierten Medizin. Die qualitative Interviewstudie mit haupt- und ehrenamtlichen Mitarbeiterinnen und Mitarbeitern konnte zeigen, dass in stationären Hospizen ein Konzept von Selbstbestimmung vertreten wird, welches über rein medizinische Entscheidungen weit hinausgeht. Zugleich konnte aber auch herausgearbeitet werden, wo nach Ansicht der Mitarbeiterinnen und Mitarbeiter mögliche Grenzen der Selbstbestimmung des Gastes im Hospiz liegen. (shrink)

How social media impacts the autonomy of its users is a topic of increasing focus. However, much of the literature that explores these impacts fails to engage in depth with the philosophical literature on autonomy. This has resulted in a failure to consider the full range of impacts that social media might have on autonomy. A deeper consideration of these impacts is thus needed, given the importance of both autonomy as a moral concept and social media as a feature of (...) contemporary life. By drawing on this philosophical literature, we argue that autonomy is broadly a matter of developing autonomy competencies, having authentic ends and control over key aspects of your own life, and not being manipulated, coerced, and controlled by others. We show how the autonomy of users of social media can be disrespected and harmed through the control that social media can have over its users’ data, attention, and behaviour. We conclude by discussing various recommendations to better regulate social media. (shrink)

This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients’ attitudes towards participating in a fictitious first-in-human trial of a novel intervention. We focused on an in-depth analysis of those statements and explanations that indicated the existence of psychological factors impairing decision-making capacity. Three main themes emerged: insufficient comprehension of the (...) inherent logic of clinical trials, the recourse to trust over comprehension, and visceral factors that override deliberative process. Overall, our results indicate a limited psychological capacity on the part of stable patients to meet the requirements of informed consent as set by Declaration of Helsinki. A redesigned informed consent procedure should take account of these psychological realities. (shrink)

Every semester, professors in every discipline are burdened with the task of checking for plagiarized papers. Since plagiarism has become rampant in the university, it can be argued that devoting time to checking for plagiarism is nothing more than a fool’s errand. Students will continue to plagiarize regardless of the consequences. In this paper, I will argue that professors do have a categorically binding obligation to confirm whether papers have been plagiarized. I will use Onora O'Neill’s account of principled autonomy (...) as the foundation for my argument. Moral agents can only act on principles that can be adopted by all. Dishonesty cannot be adopted since honesty would cease to exist. Furthermore, failing to check for plagiarized papers is a failure to treat all students and professors and ends-in-themselves. (shrink)

In this article I consider some central aspects of the naturalist philosophy of science and science and technology studies in dealing with the contested status of technoscience in medicine. Focusing on the concepts of realism and representation, I argue that theories of science-as-practice in naturalist philosophy of science should expand their scope so as to reflect more thoroughly on the social and political context of technoscience. I develop a hermeneutic of technomedical objects in order to highlight the internal connectedness between (...) social action, material agency, and the actions of scientific communities. The framework thus developed is used to re-consider the genomic turn in medicine. Pointing to the discrepancies between socially dominant representations of genomic technology and the actual interventions brought about through those technologies, I raise the question of how and where to address problems of theory and policy. (shrink)

While there is much literature on autonomy and the conditions for its attainment, there is less on how those conditions reflect on agents’ ordinary careers. Most people’s careers involve a great deal of subservient activity that would prevent the kind of control over agents’ actions that autonomy would seem to require. Yet, it would seem strange to deny autonomy to every agent who regularly follows orders at work—to do so would make autonomy a futile ideal. Most contemporary autonomy accounts provide (...) purely theoretical analysis without reference to any practical goal that autonomy could serve. These accounts are likely to resolve this issue in one direction: either almost entirely including or excluding subservient workers from autonomy. Either solution would fail to distinguish agents who sufficiently control their lives, in spite of limited subservience, according to their own standards, from agents for whom subservience precludes a fulfilling life. I suggest the solution lies in a return to goal-oriented autonomy accounts, which can use the goal to distinguish when subservience overwhelms autonomy from when subservience and autonomy can coexist. I present an account that anchors autonomy in the happiness that it provides for agents who sufficiently control their lives as determined by their more important prudential standards. On this account, agents in subservient careers can be autonomous if they determine how to make their careers consistent with their happiness. (shrink)

The paper understands the rise of ethical codes and professional ethics from the point of view of their contribution to the formation of a democratic citizenship. Various aspects of professional ethics are analyzed from the perspective of an agent-based ethics for which goods, norms and virtues are complementary factors for intelligence and individual judgment development. Through a conception of democracy understood as a way of life, professional ethics acquire a renewed meaning as a central element for individual self-realization and social (...) emancipation. In short, under the label of democratic professionalism, and following Dewey’s moral and political philosophy, it is shown that professional ethics are more than a field of application, a constituent element of a civic ethic within the framework of a democratic society. (shrink)

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...) public-private Initiatives: Public health, Market and Ethical perspectives’ identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research. We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment. (shrink)

When formulating a policy related to food in a heterogeneous context within a nation or between nations, oppositional positions are more or less explicit, but always have to be overcome. It is interesting to note, though, that such elements as culture and religion have seldom been the focus in discussions about methods of decision-making in food policy. To handle discrepancies between oppositional positions, one solution is to narrow differences between partners, another to accept one partner or position as dominant. In (...) a solid and lasting policy, any of these options has to be agreed upon by all the partners involved. In this article, I argue that context sensitivity and a shared picture of the situation are necessary bases for a solid food policy. Two methods for policy discussion are elaborated on and religious slaughter is given as an example of a heterogeneous setting with strongly diverging ideals. Several aspects have to be respected from the outset, such as culture, religion, and value systems. This condition is partly met in a model of informed consent and in a consensus model. The informed consent model is regarded as insufficient, because it lacks both methods of dealing with hierarchies and the goal of finding a shared and nuanced picture of the situation. A consensus model meets these tasks but might on the other hand, among other things, be too difficult to follow and to administer. For both models, some difficulties with justification of decisions arise. Five essential elements emanating from a combination of these models are suggested as a basis for a decision process regarding food policies: respect for each discussion partner, context sensitivity, respect for arguments including emotions, a shared picture of the situation, and finally relating theory and practice. (shrink)

This article offers a critical analysis of David Miller’s proposal that liberal immigration policies should be conceptualized in terms of a quasi-contract between receiving nations and immigrant groups, designed to ensure both that cultural diversity does not undermine trust among citizens and that immigrants are treated fairly. This proposal fails to address sufficiently two related concerns. Firstly, an open-ended, quasi-contractual requirement for cultural integration leaves immigrant groups exposed to arbitrary critique as insufficiently integrated and unworthy of trust as citizens. Secondly, (...) the focus on national culture instead of citizenship obfuscates the close link between political membership and political trustworthiness. An examination of two models of interpersonal trust, affective and cognitive,shows that there is no room for the mid-way position associated with a quasi-contract. The effect of grounding political trust in a shared national culture instead of democratic institutions is to normalize the domination of immigrants and citizens alike. (shrink)

This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we (...) consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process. (shrink)

Where ethical or regulatory questions arise about an individual’s interests in accessing bioinformation about herself, the value of this information has traditionally been construed in terms of its clinical utility. It is increasingly argued, however, that the “personal utility” of findings should also be taken into account. This article characterizes one particular aspect of personal utility: that derived from the role of personal bioinformation in identity construction. The suggestion that some kinds of information are relevant to identity is not in (...) itself new. However, the account outlined here seeks to advance the debate by proposing a conception of the relationship between bioinformation and identity that does not depend on essentialist assumptions and applies beyond the narrow genetic contexts in which identity is customarily invoked. The proposal is that the identity-value of personal bioinformation may be understood in terms of its instrumental role in the construction of our narrative identities, specifically that its value lies in helping us to develop self-narratives that support us in navigating our embodied existences. I argue that this narrative conception provides useful insights that are pertinent to the ethical governance of personal bioinformation. It illuminates a wider range of ethical considerations in relation to information access; it accounts for variations in the utility of different kinds of information; and it highlights that the context in which information is conveyed can be as important as whether it is disclosed at all. These arguments are illustrated using an example drawn from psychiatric neuroimaging research. (shrink)

Two competing intuitions have dominated the debate over facial tissue transplantation. On one side are those who argue that relieving the suffering of those with severe facial disfigurement justifies the medical risks and possible loss of life associated with this experimental procedure. On the other are those who say that there is little evidence to show that such transplants would have longterm psychological benefits that couldn’t be achieved by other means and that without clear benefits, the risk is simply too (...) great. Ethicists on both sides have called for more analysis of the link between the face and personal identity in order to get a better grasp on potential gains and losses. This paper responds to that call by looking at contemporary philosophical analyses of the relation between organ transplants and personal identity and between the human face, human dignity, and human vulnerability. It is argued that the face matters not because it is the unique marker of our identity, but because of its role in the intersubjective constitution of moral identity and human dignity. (shrink)

In this paper I examine the prevailing assumption that there is a right to procreate and question whether there exists a coherent notion of such a right. I argue that we should question any and all procreative activities, not just alternative procreative means and contexts. I suggest that clinging to the assumption of a right to procreate prevents serious scrutiny of reproductive behavior and that, instead of continuing to embrace this assumption, attempts should be made to provide a proper foundation (...) for it. I argue that the focus of procreative activities and discourse on reproductive ethics should be on obligations instead of rights, as rights talk tends to obfuscate recognition of obligations toward others, particularly those who bear the most significant burdens of the procreative process. I examine some possible foundations of a right to procreate as well as John Robertson’s thoughtful account of “procreative liberty” but conclude that at the present time there exists no compelling account of a right to procreate. Finally, I conclude that in the absence of a satisfactory account of a right to procreate, we should refrain from grounding practices or polices on the assumption that there is such a right. (shrink)

Abstract The apparent decline of trust in our political and social communities is widely lamented by both social scientists and political analysts. Our newspapers now regularly feature new evidence indicating the decline of trust, as well as regular commentary worrying about the possible effects on the political and social institutions that matter to us. Of late, political philosophers have taken up the task of assessing what, specifically, is on the decline and what, further, might be the consequences of this decline. (...) The five books reviewed below all attempt to answer four central questions: What is trust? Is trust really on the decline? If it is, what are the possible effects on our communities? What possible solutions can halt the decline of trust? The competing answers offered by these philosophers are evaluated, revealing we are only part way to resolving these important issues. (shrink)

In a severe influenza pandemic, hospitals will likely experience serious and widespread shortages of patient pulmonary ventilators and of staff qualified to operate them. Deciding who will receive access to mechanical ventilation will often determine who lives and who dies. This prospect raises an important question whether pandemic preparedness plans should include some process by which individuals affected by ventilator rationing would have the opportunity to appeal adverse decisions. However, the issue of appeals processes to ventilator rationing decisions has been (...) largely neglected in state pandemic planning efforts. If we are to devise just and effective plans for coping with a severe influenza pandemic, more attention to the issue of appeals processes for pandemic ventilator rationing decisions is needed. Arguments for and against appeals processes are considered, and some suggestions are offered to help efforts at devising more rational pandemic preparedness plans. (shrink)

Strategies for improving the explainability of artificial agents are a key approach to support the understandability of artificial agents’ decision-making processes and their trustworthiness. However, since explanations are not inclined to standardization, finding solutions that fit the algorithmic-based decision-making processes of artificial agents poses a compelling challenge. This paper addresses the concept of trust in relation to complementary aspects that play a role in interpersonal and human–agent relationships, such as users’ confidence and their perception of artificial agents’ reliability. Particularly, this (...) paper focuses on non-expert users’ perspectives, since users with little technical knowledge are likely to benefit the most from “post-hoc”, everyday explanations. Drawing upon the explainable AI and social sciences literature, this paper investigates how artificial agent’s explainability and trust are interrelated at different stages of an interaction. Specifically, the possibility of implementing explainability as a trust building, trust maintenance and restoration strategy is investigated. To this extent, the paper identifies and discusses the intrinsic limits and fundamental features of explanations, such as structural qualities and communication strategies. Accordingly, this paper contributes to the debate by providing recommendations on how to maximize the effectiveness of explanations for supporting non-expert users’ understanding and trust. (shrink)

This paper outlines an integrated approach to trust and relevance with respect to arguments: in particular, it is suggested that trust in relevance has a central role in argumentation. We first distinguish two types of argumentative relevance: internal relevance, i.e. the extent to which a premise has a bearing on its purported conclusion, and external relevance, i.e. a measure of how much a whole argument is pertinent to the matter under discussion, in the broader dialogical context where it is proposed. (...) Then, we argue that judgements of internal relevance heavily rely on trust, and that such trust, although occasionally misplaced , is nonetheless based on several reasons, and thus often justified, by either epistemic or pragmatic considerations. We conclude by sketching potential methods to formally model trust in argumentative relevance, and briefly discussing the technological implications of this line of research. (shrink)

A normatively adequate public health ethics needs to be anchored in political philosophy rather than in ethics. Its central ethical concerns are likely to include trust and justice, rather than autonomy and informed consent.

We argue that contemporary psychiatry adopts a defensive strategy vis-à-vis various external sources of pressure. We will identify two of these sources – the plea for individual autonomy and the idea of Managed Care – and explain how they have promoted a strict biomedical conception of disease. The demand for objectivity, however, does not take into account the complexity of mental illness. It ignores that the psychiatrist’s profession is essentially characterized by fragility: fluctuating between scientific reduction and the irreducible complexity (...) of reality. Therefore, the psychiatrist is not in need of hard and fast rules, but of judgment. At the end, we suggest that philosophy could inject some healthy uncertainty within psychiatry in order to restore its fragile identity. Our examples are drawn from the Dutch situation but we are confident that they apply to other countries as well. (shrink)

This article seeks to explore and analyze the relationship between autonomy and trust, and to show how these findings could be relevant to medical ethics. First, I will argue that the way in which so-called “relational autonomy theories” tie the notions of autonomy and trust together is not entirely satisfying Then, I will introduce the so-called Encapsulated Interest Account as developed by Russell Hardin. This will bring out the importance of the reasons for trust. What good reasons do we have (...) for trusting someone? I will criticize Hardin’s business model as insufficiently robust, especially in the context of health care, and then turn to another source of trust, namely, love. It may seem that trust-through-love is much better suited for the vulnerability that is often involved in health care, but I will also show that it has its own deficiencies. Good health care should therefore pay attention to both models of trust, and I will offer some tentative remarks on how to do this. (shrink)

If the current trend is any guide, it looks like we are heading towards a future in which relationships are determined and regulated by rights. In addition to the ?universal human rights? declared soon after the Second World War, other ?universal rights? have been declared and added to the list of rights, such as the rights of the child, the rights of indigenous peoples and so on. A question arises as to whether a world in which our relationships are governed (...) entirely on the basis of rights is an appealing one. I want to suggest that if our common future is regulated entirely by rights then we are moving in the wrong direction. By contrast, Tu Wei-ming believes that if Confucianism flourishes, we will move towards a society based on trust rather than rights, or what he calls a ?fiduciary society?. I will argue that while Tu's Confucian fiduciary society is perhaps an impractical ideal, a move towards it will provide a necessary counter-balance to the relentless march towards a rights-based society. (shrink)

In this paper I will discuss Milton Friedman’s thesis that the social responsibilityof business is to maximize the shareholders’ profit. I examine the underlyingassumption of self-interest and argue, contrary to the neoliberal thesis ofderegulation, that the profit motive must be constrained by strong state regulations.Furthermore it facilitates keeping the division between business andgovernment intact. The financial crisis shows that the emphasis on a profitmotive without the external constraints of tight regulations has serious implicationsfor the trustworthiness of business. In the latter (...) part of the paper I willdiscuss trust in relation to self-interest. The overemphasis on self-interest isparticularly unfortunate in connection with business, and not least the financialsector, as this institution is grounded in trust, without which it cannot survive.Seen from this angle, it can be claimed that a business model, celebratingprimarily self-interest, profit-motive and deregulation, is not going to be sustainablein the long run. (shrink)

Trust has generally been understood as an intentional mental phenomenon that one party has towards another party with respect to some object of value for the truster. In the landmark work of Annette Baier, this trust is described as a three-place predicate: A entrusts B with the care of C, such that B has discretionary powers in caring for C. In this paper we propose that, within the context of thick interpersonal relationships, trust manifests in a different way: as a (...) property of the relationship itself. We argue that this conceptualization has important implications for the debate over the ethics of interpersonal interventions. In particular, when trust is understood in this way, actions that would otherwise be deemed morally troubling may be permissible, or even morally desirable, on account of their role in strengthening trusting relationships. (shrink)

The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...) and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of ‘epistemic interventions’: interventions which involve the communication of information. First, I offer an analysis of the concept of a ‘right not to know’ in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent. (shrink)

In this paper, I examine the ethics of e - trust and e - trustworthiness in the context of health care, looking at direct computer-patient interfaces (DCPIs), information systems that provide medical information, diagnosis, advice, consenting and/or treatment directly to patients without clinicians as intermediaries. Designers, manufacturers and deployers of such systems have an ethical obligation to provide evidence of their trustworthiness to users. My argument for this claim is based on evidentialism about trust and trustworthiness: the idea that trust (...) should be based on sound evidence of trustworthiness. Evidence of trustworthiness is a broader notion than one might suppose, including not just information about the risks and performance of the system, but also interactional and context-based information. I suggest some sources of evidence in this broader sense that make it plausible that designers, manufacturers and deployers of DCPIs can provide evidence to users that is cognitively simple, easy to communicate, yet rationally connected with actual trustworthiness. (shrink)

An analysis of the policy, research and historical documents was performed to better understand the regulatory context within which the Japanese government has come to address the social control of human genome research and the measures it has taken, with regard to the handling of personal data, an area where innovations in the life sciences and in information and communication technology overlap. Our study revealed a shift in policy over time from a rigid to a more collaborative approach to regulation. (...) From the 1980s to the 2000s, security control measures were developed to prevent leakage of personal data to external entities, using methods such as anonymisation, which can be applied in a linkable or unlinkable fashion. However, by the 2010s, de-identification measures have been introduced. They make it possible to utilise personal data that is de-identified in certain types of genomic research. This also involved the establishment of an independent data protection authority that controls the utilisation of data in collaboration with other stakeholders. Through this process, bioethics policy has become an established science and technology policy in Japan; and in recent years, bioethics policy has also gained relevance in areas outside the life sciences. (shrink)

Informed consent honors the autonomous decisions of patients, and family consent places importance on decisions made by their families. However, there is little understanding of the relationship between these two medical decision-making approaches. Both approaches exist in Japan as part of its truth disclosure policy. What is the status of family consent in the United States, from which Japan introduced informed consent? This paper compares the situation in the United States with that in Japan, where family consent has been combined (...) with informed consent. It then explains the history of policy development through which family consent was added to informed consent in the United States. Based on this analysis, the paper suggests that the relationship between informed consent and family consent in the United States was established on the basis of a family model that places more importance on trust-based relationships than it does on blood ties. (shrink)